This personal essay is included
in a collection of essays edited by Eileen Ahern: "Uncharted
Journey: Unexpected Blessings” (published Fall 2004,
CDLS Foundation). Although it isn't part of the family
history focus of this site, there may be a family who
can connect with it (thanks to the wonders of Google)
and in reading it perhaps find some solace - perhaps feel
less alone.
Sharon Oddie Brown, updated October
14, 2005.
For more information about CDLS,http://www.cdlsusa.org/
Sharon Oddie Brown, August 2003

“I try to help you with your schoolwork,”
I yelled at my daughter, “and you scribble all over it. You
rip it up. You throw it on the floor. So then, I say, okay,
lets do it again. You say I can’t. I say, FINE! All
I’ve been getting from you is: I want I want I want.
All day long you’ve been saying, NO NO NO. I’ve
had enough! Get out of here! I don’t want to even see
you! Get to your room!”

5:00 PM is the witching hour in our household, this day it was my turn to be the witch. Standing in front of me was
my daughter, age eight, about three feet tall and still
only capable of speaking in the simplest of sentences. She had been born with CDLS. Cornelia de Lange Syndrome, to be
precise.

For the first three years of her life, she screamed for five hours
a night with what we later learned was probably pain from reflux
(acids coming up from her stomach and burning her oesophagus). In
her early months, it had taken me ten hours a day to nurse her with
a special technique that kept her back straight and her body slightly
away from mine. A cuddle – for her - was sensory overload.
For two years I did this, her digestion too iffy too handle much
else. Yet, there we were, eight years later, combatants.

Not that this
was new. On most days her emotional volatility would put the Italian
parliament to shame .
For much of this day, she had been displaying what the experts
label oppositional defiance disorder, and finally - in the witching hour - I lost it. As I spooled on for several paragraphs worth, she stood still as a statue about eight feet away and
simply watched me. Thirty-four pounds of invincibility. When I finally
stopped to take a breath, she quietly interjected,
Mum. You have other options.

Thank goodness for the mercy of laughter.

Twelve years later, my husband and I were in the audience at her
High School graduation where in spite of the limitations of her IQ (close
to seventy), she had graduated with a Dogwood Certificate - one
notch beneath University Entrance. She had even made the Honour
Roll. Twice. As she strode before us, she was wearing a blue gown
with the square blue cap and a golden tassel dangling down by her
left eye. Her shoes were silver. Her shoulders were square with
pride as she mounted the steps to the stage, along with some hundred
and thirty others, all their hearts filled with that stew of promise
and questioning particular to young grads. I had taken seven
pictures already, pre-digital pictures, and she was yet to be seated on the stage.

Slow down, Mum, I told myself. Breathe.

When she was born, her prognosis was bleak. A month later, my husband
and I were still absorbing the advice given by our GP, our paediatrician and our geneticist.
I also delved into medical texts at the Woodward Biomedical Library where I had
once worked. It seemed, both from what I could read and what we were being told, that our daughter would likely die before age two. It also
seemed most likely that if she didn’t, she would be profoundly
retarded and autistic.

Days after this diagnosis, Tante Hannah who
at age eighty had held dozens of the babies born into my husband’s
family took our daughter into her arms and looked thoughtfully into
her eyes. “Nicht retarded”, she insisted. I desperately
wanted to believe this, but couldn’t. Not back then.

In those early years, the most profound healing from a medical
person came to us from our GP. He had come to our home because I
had told him that I felt too emotionally raw to come down to his
office and be visible in a public space. After the usual pleasantries,
he unwrapped our daughter’s clothing, lightly tapped her tummy,
manipulated her limbs and listened to her heart and lungs with his
stethoscope. Then he told us, Medicine is bankrupt when it
comes to things like this. All we can give you is a label. You need
another way to see your daughter. To see Vanessa. Maybe you should
have an astrological chart done. Get another vantage point.
Then he sat down and played piano for us. For half an hour. Nothing couold have been more healing.

A couple of months later, our paediatrician at Children’s
Hospital, a man in his sixties, told me that one of his patients, born with Down Syndrome, was now in
his twenties and going to college. These syndromes have a range,
he told me. Not everyone is hit equally hard. While I couldn’t
believe that college might be possible for our daughter, I decided
right then and there never to set the ceiling too low for her.

And
now? Well, she goes to Capilano College two days a week and is doing
two courses on the Internet. Computing. Keyboarding. Accounting.
More correctly, I am doing these courses too. She needs someone
constantly sitting beside her, keeping her on task, calming her
when she panics. So, I am learning about the Internet.

In The Wizard of Oz, Dorothy clicks her red shoes together and
is in Kansas. Getting to college has taken Vanessa a whole lot more
than two clicks of two red shoes. Her baby steps began
with the staff at Sandcastle Preschool. They taught sign language to our whole family. Vanessa didn't start speaking until about age
five or six. Just like Einstein, we said, even though we knew how far off the scale that was.

During those early sign language days, I was elected to our Municipal
Council as an Alderman. Vanessa and her older sister, Sabrina, thought
that I had been elected “Older Mum” which made as much
sense as anything. I came to many of the meetings with an oversize
briefcase which impressed the media no end, but which was actually
filled with Duplo and puzzles. While Council deliberated, Vanessa played silently beneath the
Council Chambers table, tapping my leg if she needed me to watch
her hands for a message. In fact, her attendance was better than that of
many other elected officials. Some would argue that her input
was preferable too. The City administrator emptied a drawer in his office
and filled it with colouring books, a chalk slate and an Etch-a-Sketch.

One day when I was at a meeting in another municipality, the school
phoned City Hall to tell me that Vanessa had just thrown up. Knowing
it would take hours for me to get back, the Mayor’s secretary
drove over and picked her up, put her vomit-dampened runners into
an official looking envelope and stamped it In Camera.
Vanessa then slept on a couch in the mayor’s office until
I returned and took her home.

Kindergarten was great - so good for Vanessa that she did it twice
- but Grade One was a disaster. The Grade One teacher didn’t
agree with the new policy of integrated classes, was not emotionally
equipped to handle it and threw spanners into the works with great
accuracy and regularity. She phoned me at least twice a week to
come and pick Vanessa up. “Right Now!” This in spite
of the fact that illness and stress reactions meant that Vanessa
was only at school something less than half time anyway. Our phone
calls tended to go something like this:

"You have to come pick Vanessa up."
"Why?"
"She just pulled her pants down in class."
"Back up a moment. What was happening?"
"She wouldn’t do her math."
"And then she pulled her pants down?"
"Yes."
"And does she have to do her math now?"
"Well, no."
"So, guess who won this round?"

I couldn't resist the final retort.. After a
few months of this, the proverbial finally hit the fan.
My husband took the call one Friday afternoon. Vanessa’s teacher was hysterical and feared for the loss of her job. Vanessa's older sister Sabrina told us she had heard the sounds of slaps, hard ones from her classroom across the hall. Fortunately my husband told the teacher, I think I hear
two calls for help here. That night, an official from the School Board
called up to say that there would finally be an Aide in the classroom
during the morning, starting next Monday. We agreed that for the afternoons, I would take
Vanessa home. We played together. Did puzzles. Cooked. Coloured.
Or went to meetings at City Hall.

I doubt that we have received that extra help if my husband
and I didn't have such a high profile in the community. The children
who pulled a short straw and were born to alcoholic parents and who live in violent families need this kind of help
even more than we did, but we rarely open the public purse wide enough for these kinds of children
to benefit. As parents, all we can do is volunteer our time, donate,
advocate and never forget. Delange Syndrome wakes us up to the injustice of all this.

Although Grade One was a pain, we also had many gifted people
working with Vanessa in her Elementary School years. Because she
was so sensitive to loud noises and other stimuli, she would frequently
overload. Sometimes she would be like a fuse that blows and shuts
down when the line heats up. Other times, she would be on her back
kicking her feet and screaming. The gifted teachers intervened before
the problems arose. They gave her time out when they intuited its
necessity. The school principle backed them up and welcomed Vanessa
into his office, not as a punishment, but as a place of respite.
She blossomed.

At home, we complemented the work done at school. Because Vanessa
was so good with puzzles, we sought out all kinds of them to teach
her basic skills. We had a soft rubber puzzle with the letters of
the alphabet and a soft rubber clock that had holes to press in
the numbers and hands. We had three dimensional hard plastic puzzles
which had slots for wooden tiles with letters on them so she could
make patterns and write words which could go up, down and sideways.
She seemed to learn most easily through her body, so we all took
turns with games such as writing big letters on each other’s
backs with our fingers and challenging the person whose back was
the slate to guess what the word was. And yes, there were times,
many of them, when it all ended in tears. Often, an assignment,
which had taken days to complete, would be ripped to shreds in the
eleventh hour.

The first two years of High School were the worst of Vanessa’s
schooling career. It was a classic case of the wrong system with
the wrong person in charge being responsible for fitting a round
peg into a square hole. In this school, the special needs students
were separated into two camps. The one into which Vanessa was streamed
had all the students whose problems had as much to do with behaviour
as they had to do with learning. The other stream was for children
who could barely talk or else had other huge cognitive barriers.
The behavioural stream included three girls and about
twenty boys, boys who were often literally bouncing off the walls
- and anything else they could find. Vanessa was terrified but was
also so keen to succeed that she said nothing. She sat there, quietly
in her own little zone, accomplishing little and rocking when it
all became too much.

The worst part for her was Phys. Ed.. Imagine a four foot six,
less than robust Grade Eight girl being required to play soccer
with mostly males, some of them up to six feet two. Her reaction
was to throw up or have migraines on P.E. days, although it took
me a while to connect the two. When I talked to the head teacher
about finding a solution to this, I got nowhere. If she is
going to stay in this stream, she needs P.E., he said. The
alternative was to put her in the stream with the largely non-verbal
low functioning students. This was no alternative. I couldn’t
imagine a better way to kill her self-esteem and shut her down for
good.

After three months of getting nowhere on this score, my husband
intervened. Suddenly, it was possible for Vanessa to drop the P.E.
component. I shared my outrage with a friend. I go in daily,
I talk, I write letters, I get nowhere, and one
phone call from Andreas and we have what we want.

Well,
dear, she said, it’s simple. You don’t
have the dingle dangle. This victory, however, proved illusory.
At the end of the year when Vanessa got her report card, her grade
for P.E. said “F”. This became one of the reasons we
eventually decided to move away from the town of Mission.

On BC’s Sunshine Coast, where we now live, the local School
Board had recently undertaken an innovative initiative. They
asked all their staff - teachers, aides, secretaries, janitors,
school bus drivers, you name it - if they were interested
in taking training in working with special needs students. The training
would be done on their own time, evenings and weekends, but the resulting
credits would mean that in most cases, salaries would rise. The
School District contracted with a university to package the
courses so that the staff could do them locally
(the university was a ferry ride and a two-hour drive away). As
a result, all staff were more attuned to the needs
of students with various handicaps. Also, because they had come to
know one another better by being in a common learning environment, they were much
more comfortable seeking one another out for problem solving. A science teacher who had never considered how her teaching style
might be adapted for kids like Vanessa now incorporated such changes into her ongoing methods
of teaching. The janitor's advice on how things were going became important. Win, win.

Students like Vanessa had choices. For P.E., she was able to take Outdoor Ed. with an emphasis on hiking,
canoeing, swimming and such. When the rest of the students were kayaking, it was decided
that two-handed kite flying would be more appropriate for her. In later years, she did horseback riding, yoga, walking and
weight training. The end result was that she became more fit, learned
how to participate in activities which would be available to her
as an adult and best of all, had no reason to throw up or have migraines
on P.E. days. Her absentee record went from an annual seventy-six
days in her old school to two days in her new one.

In this school, I was welcomed as a partner, not treated as an
adversary. These were the years when she attained Honour Roll status. When
problems came up, the head teacher got right onto them. Vanessa
completed most of her schoolwork at school, not at home
as had been the case in the other high school. Teachers e-mailed
me to keep me posted. In Grades Eleven and Twelve when Provincial
Exams were required in core subjects such as Science and English,
she was given an Aide to sit beside her and help her stay focussed.

Her hardest exam was English, language skills still not being her
strong suit. The provincial rules gave her extra time, but no other
concession. Several times during the exam she burst into tears and
had to be given time out. The Aide would get her a drink, walk her
around the school and do whatever was required to get her back together.
Five hours later, the two-hour exam was completed. Two months later,
when the marks came in, Vanessa had scored 68%, right on the provincial
average. At graduation, she had accumulated
a $400.00 educational credit towards post-secondary education.

Even so, there are still no ruby red shoes to click together. A
couple of years ago, Vanessa and I drove down the American west
coast on an adventure of her choosing - to go to LA and see where
her beloved soaps were filmed and maybe, just maybe, see a star.
I packed the trunk with camping gear but it quickly became apparent
that she was already on overload. Motels with air conditioning and
swimming pools in which she could float for hours became the minimum
standard. Even at that, even with the most attuned of handling,
meltdowns were frequent.

At the end of one of these days, on our way home in a motel somewhere
in northern California, I said, Look. We have two more days
of driving and I can’t stand being treated the way that you
are treating me.

You don’t understand, Mum,
she said. She smacked one of the beds. Say this is my bad
brain. Then she smacked the other bed. And this is
my good brain. She stood between the two beds, facing the
good bed. And there is a wall between them. Cement. And I
am trying to get through. And I have only my fingers. She
clawed at the imaginary wall. It’s hard, Mum.

Children who are more acutely afflicted by the brain-scrambling
of this syndrome may live in blissful ignorance of its costs. Not
young women like Vanessa. She is too high functioning for ignorance.
She yearns for friends and has few who are her own age. Depression
is a frequent visitor to her emotional landscape. Days can go by
with her only social contact being my friends and myself. Why
do I have to be born like this, she demands. Premenstrual
days are the worst.

At her college courses, her emotional wiring
is still such that she needs someone to sit with her and keep her
on task, so that’s what I do. It isn’t perfect. There
used to be money for institutions to offer such supports but we
are moving into meaner times in our political environments. The
commons is shrinking. We do what we can.

Wisdom and intellect don’t necessarily come in the same
box. I have known many people gifted in the smarts department who
are still in nursery school when it comes to that quality which
we call wise. Eighteen years ago, when my mother was lying in her
deathbed at our home, Vanessa carefully daubed a tear from the corner
of my mother’s eye when no one else had even noticed that
it was there. She was two years old. Years later, when an aged aunt
said, Don’t cry for me when I die. I am old. It will
be good, Vanessa’s response was, Of course we
will cry. It will hurt. We love you so much. Two doors down
from us, a family has just broken up in a painful prelude to divorce.
Vanessa has some kind of radar, which lets her know when the mother
of three children needs a hug. She walks over, delivers it and comes
home. This is what I call “wisdom”.

Sure there are still many days (far, far fewer now) when I find
myself at the end of my tether with frustration over her emotional
flame-outs, and yes, there are still days when I lose it. Still, I do my best to remember the best advice: Mum, you have other options.

POSTSCRIPT 2010: For the past eight years, Vanessa has worked an average
of three mornings a week stocking shelves in the hardware department
at Canadian Tire. She passed all her college courses, and plans to do more. She lives in her own home - with meals and other supports from family and friends. She’s
moving on.